Autism: The Dark Side

Generally, I have found autistic people to be supportive and friendly, but over the past few years it’s become apparent that the autistic ‘community’ has it’s fair share of.. how shall I put this?

Arseholes.

You see, there is this so called ‘war’ between the neurodiversity movement and the Autistic Dark Web and, believe me, dark is what you get. So switch on those SAD lamps, folks and I’ll take you to the dark side..

What is The Autistic Dark Web?

The Autistic Dark Web is a group of autistic people who find little or no positivity in being autistic and most would rip your arm off for a cure, though I doubt even they would thank you for a bleach enema! 😮

I visited the Dark Side recently and it was, erm, unnerving. It suddenly went icy cold and It was as if all the happiness had gone from the world.. or am I confusing it with the Dementors in Harry Potter?

How To Spot A Dark Webber

  • The rapid drop in temperature when you engage with one. (Brrrrrrr)
  • Dark images. (Menacing looking figures wearing hoodies)
  • Images of Buddah (Bit of a misnomer)
  • They often answer your question with a question. (Avoidance strategy)
  • You point out that they haven’t answered your question.
  • They belittle you by saying that ‘your’ effing inept at communication’.
  • You suggest they check their grammar before insulting others. (low blow, but what the hell)
  • They lose their shit and block you, but not before they call you a banker (intentional typo) one last time.

To be fair, some proponents of the Dark Side are able to debate without resorting to abuse. They are clearly articulate, but even then there is an air of superiority about them that prompts bile to reverse itself up one’s oesophagus and into the mouth. You get me?

But there is one subject in particular which has most dark webbers foaming at the keyboard and that is self-diagnosis.

Examples

“Stop speaking over autistic people. Plus stop promoting self diagnosis, it’s still dangerous.” ~ Twitter

I engaged with this delightful young lady and she called me a swear word that rhymes with punt. 😮

More?

“i dont get why people think they can self dx autism cuz when i was diagnosed they had to ask my mom about my early childhood that i dont remember at all” ~ Twitter

The professionals would have had a hard job asking my parents about my early childhood seeing as they were both dead. Aside nabbing the nearest medium and summoning them up via a seance – there wasn’t a whole lot I could do about it either, but, surprise surprise, I still got a diagnosis.

How about this one?

“People give me headache. If someone tells you they felt ill for a decade and never addressed it save for adding it as selfidentity either they are lying or need to be seen as victims. I thought for years autism may explain things but never identified autistic until dx. #respect #” Twitter

Autism isn’t an illness, but it’s a popular argument over at the Dark Side and one dark webber used a brain tumour as her argument as to why it’s wrong to self diagnose. Is it a credible argument though?

Nope.

If you think you have a brain tumour, you generally see your GP and pronto or risk dying. To my knowledge, nobody has ever died of autism. Autistic people are at a higher risk of dying earlier due to co-morbid conditions (not to mention the strain of having to deal with pillocks on social media) but autism itself can’t kill you. A brain tumour, however, can render you as dead as a dodo!

There are valid reasons why people self-diagnose such as accessibility, lack of money for a private dx and having autistic children whose needs come before their own. It should also be noted that diagnosis isn’t always beneficial. However, the dark ones claim that the real reason people don’t go for assessment is because ‘they know they won’t meet the criteria.’

Say wuh?

Then there are those whose debating skills just blow you away..

“Get tested or shut the fuck up.” ~ Twitter

Personally, I think this should be the tagline for the Autistic Dark Web.

As it is, I self-diagnosed for four years. The reality is that most self-diagnosers go on to receive a formal diagnosis, but simply being understood by another human being is enough for some. However, you won’t receive any support from dark web types who categorically state that you are NOT autistic until you have an official diagnosis and, what’s more, you have no business identifying as autistic!

Then there’s this.

“#autisticdarkweb I’m going to say it. If someone is married (or in a relationship), has children, has friends, and a good career or job, then they are not autistic. And should not be diagnosed as such because they are obviously not disabled by their ‘autism'” – Twitter

*sets fire to diagnosis papers*

In response to the above tweet – I’ve been married twice and I have three children. I’ve had five jobs over my lifetime and seven ‘real life’ friendships – none of them instigated by me. I’ve also had two eating disorders (A+B), a nervous breakdown, anxiety disorders, depression, OCD, chronic illness, IBS, chronic migraines, sensory disorder, insomnia and so on and so on..

At this point, I’d like to underline the living shit out of the next two sentences. Alas, WordPress only allows for one..

It’s the anxiety and the eating disorders and the chronic illness and the depression and the mental breakdown etc which gives a clue as to how hard it’s been to achieve all of the above.

In that person’s opinion, I can’t possibly be autistic because I tick most of those boxes. But the problem with ticking boxes is that it doesn’t account for the gargantuan effort it takes for an individual to achieve such things. Nor does it account for the cost to mental and physical health. Being a wife and mother doesn’t make me any less autistic – it just means that I’ve had to work hard to accoumplish it.

I’m also the mother of a really amazing autistic boy who has had many challenges to overcome in his nine years, including experiencing a hate incident at eight years old. But I don’t hate autism and I don’t hate being autistic because I have nothing to compare it to, so what’s the point?

To the dark webbers who claim that I’m not autistic because I have a family and don’t hate myself.

I didn’t expect to experience abuse or exclusion by other autistics. Granted, this was naivety on my part because autistics are clearly no different to neurotypicals when it comes to conflict. This is because humans are hardwired to fight. That said, conflict takes a lot more out of hyper-sensitive autistics like me and so it’s with regard for what remains of my sanity that this post draws a line under my interaction with the Dark Web (and Twitter) as my month off has led me to realise that it’s bad for my mental health.

Having been frost-burnt by several dark webbers, my advice is to leave them well alone – the hardliners more so. But should you decide to venture over to the Dark Side to take a peek for yourself, I suggest you wear your thermals.

However difficult life may seem, there is always something you can do and succeed at. ~ Stephen Hawking

 

#Take The Mask Off: What It’s Like To Wear The Mask

I’m an actress – acting is what I do. It’s what I’ve always done, but it’s not a profession or even a hobby. It’s survival.

I can pin-point the day that I realised that I was different. It was my first day at school. I was five years old. Up to then, I’d lived in my own world with occasional visits to this one.

I remember that I didn’t like this world very much.

I remember strangers talking to me.

I remember strange voices saying, ‘Aren’t you speaking to me?’

I remember voices asking if I was shy.

I didn’t want to talk to them.

I didn’t want them to talk to me.

It wasn’t shyness. It was selective muteness. That’s what happens when the world gets too much. I shut down. I stop talking. I become mute. It’s my safety valve. Without this ability to shut off, I’d totally (and regularly) lose my shit.

I started school in 1975 and the other children treated me differently from the onset. My first day was shit and it set the tone for the next ten years. Teachers told me off or ignored me. Either way, they didn’t understand me. I was bullied, as so many autistic kids are. Only I didn’t know that I was autistic. I just knew that I wasn’t like everybody else. Eventually I understood that I had to interact with people in order to fit in. I had to be more like them and less like me.

That’s when I learned how to perform.

So my life has been one big performance.

I’ve taken inspiration from many people. Some female, some male. All researched via TV, books or people I’ve come into contact with. I copied their voices, their mannerisms, their style (where sensory issues allowed) – so much so, that I lost my own identity.

I forgot who I was.

Was I an alien? Was that why I found it so hard to fit in?

Had I actually been birthed by a human being?

Or had I somehow landed on the wrong planet?

Performing. Chamoflaging. Masking. Whatever you call it, it means the same thing – NOT BEING YOU!

As the years have gone by, I’ve tried my hardest to be like everybody else, except that masking came at a huge personal cost.

One example of how I mask is with eye-contact.

I struggle with eye-contact, though on a good day, you probably wouldn’t guess.

I don’t like looking into most people’s eyes and I don’t like most people looking into mine. It’s an incredibly sensory experience for me – one which overwhelms and makes me feel vulnerable. Like they can read my crazy thoughts? Or I’m standing in my bra and pants. Either way, it’s not good. Then, in my mid-twenties I taught myself to look just above someone’s eye. I’d read it in a book somewhere. It helped, but the effort comes in remembering where to look and when it’s appropriate to look away. It’s in trying to take in what someone is saying while your concentration is elsewhere. There is this inner monologue going on reminding me what to do and when. It’s not natural, therefore it’s not effortless and the more anxious I am, the worse my eye-contact gets. When I’m really anxious, my eye-tic kicks in so people think I’m winking at them. *sigh*

I’ve fought against the mental and physical exhaustion that comes with trying to be something I’m not. Diagnosis helped me to understand who I am and why I experience the world differently and it took some of the pressure off. However, the diagnosis coincided with a nervous breakdown and though I wouldn’t wish one on anybody, it couldn’t have been more timely because I was unable to mask during my assessment. What they got was the real me because I had no energy to pretend otherwise.

Burnout is something that many autistic people encounter at some point in their lives. I did well to get to 46 before I broke down, but when I did break, the fallout was catastrophic. I didn’t know what the hell had hit me. I thought I was shuffling off my mortal coil. Or going mad. Or both. What I didn’t know was that my years of pushing myself beyond my limits had set me up for a chronic condition called Fibromyalgia. Look it up, it’s shit! At the same time, my life-long anxiety turned feral and my entire body started malfunctioning.

I was really unwell.

Masking had been draining the life out of me.

The only way back from that mental crap-hole was to be myself, not that I had any energy to mask anyway.

The only way back was to stop forcing myself to interact because it’s what society expected me to do.

The only way back was to be me.

I live with the knowledge that my health has suffered because of having to mask and it’s hard not to grieve for what’s been taken from me over the years. I didn’t choose to be autistic. I didn’t choose to be different. I didn’t ask people to be arse-holes to me. For most of my life, I considered myself to be the problem to be me, but I am not the problem.

I never was.

I can’t discard the mask completely. It’s impossible. There will be situations where I need to perform in order to get through them because not everything is in my control. Nor can it ever be. But I know that I can slip my mask on occasionally and draw from all those years of acting. The difference is that I give myself permission to leave when I’ve had enough and to accept that I will need recovery time afterwards and to lose the guilt-trip. Self-care is better late than never, yes?

My problems stem from trying to force myself to fit into a world that isn’t mine. Or that’s how it feels. Shove your size 4 foot into a size 2 shoe and it’s going to hurt, right? Try and walk in those shoes, every single day, and you’ll cripple yourself. You get me? The consequence is the damage to my physical and mental health. I’m basically f**ked and I can’t change any of it. I can’t rewind the clock. Not that it would help if I could because autism had a different meaning in those days. All I can do is be here as I was meant to be. As I am wired to be.

To help me to remember, I keep these words where I can see them everyday.

My darling girl, when are you going to realize that being normal is not necessarily a virtue? It rather denotes a lack of courage. Alice Hoffman ~Practical Magic

 

 

 

 

 

Autism: The Pretender

I’ve always known I am different, but for most of my life I haven’t known why.

I’ve had to suppress the real me and try to be like everyone else in order to try and fit in.

Masking. Mimicking. Copying. Pretending. Camouflaging. Whatever you call it – it all amounts to the same thing: Survival.

The cost of trying to fit in is high as many autistic people succumb to physical and mental exhaustion at some point in their lives. Like me. I burned out at 46 years of age.

The moment we leave the security of our homes we become somebody else in order to survive.

We are performers.

So much for autistic people not being able to act, eh?

As well as mimicking my peers, I took inspiration from characters in books and TV. Sometimes it was hard to know where the characters ended and I began. I remember asking my mirror reflection, ‘Who are you?’

Forty years later, I was diagnosed autistic.

Finally. I knew who I was.

Make-up has always been a tool in my ‘how to survive life’ box. Like clowns who hide their true identity behind over-sized clothes and painted on smiles, I tried to hide my ‘weirdness’ behind eye-liner and a layer of foundation thick enough to plaster walls. I’d seen how make-up changed my mother’s face so I experimented on my own and suddenly I didn’t look like me anymore, and if I didn’t look like me, then surely it would be easier to pass off being like all the other girls and, just maybe, they’d like me?

Er, no.

I wore eye-liner at first, but Dad went paternal on me and made me sponge it off. He didn’t understand my reasons for wearing it. How could he? He was a ‘man’s man’ and he just wanted me to stay a little girl as long as possible. It’s understandable, I guess.

Girls my age were wearing make-up – the difference with me was that make-up put a barrier between me and them – at the same time allowing me to blend in a little better. It was psychological because in reality I was still different. I just looked more feminine..

“My dad used to say makeup was a shallow girl’s sport, but it’s not. It’s armor.”~ Courtney Summers – All The Rage

For me, make-up wasn’t about beauty or fashion. It was about protection. Just as a riot cop would never go into an affray without their helmet on, I would never go out without my ‘mask’ on because I would feel vulnerable and exposed.

It was about pretence.

“Costumes and makeup play an important role in the drama, character creation.”

I have reinvented myself more times than Madonna, only with less success. And money.

Is it any wonder I burned out?

Since my diagnosis there have been changes. I feel different. Lighter. Less tolerant of people’s crap. I’ve found that the word, ‘no’ comes a lot easier these days.

I’m a long way from being make-up free as some habits are hard to break. Plus, I look bloody horrifying without it, but the mask is slowly falling and hopefully one day I will wear make-up simply because I want to – not because I need to.

So, what’s changed?

I accept myself for who I am. Also, I’m knackered from decades of trying to hide who I am in order to fit in and for what?

I GOT BULLIED ANYWAY.

Bullied. Ostracized . Whatever. It’s basically human beings exploiting vulnerability instead of offering protection and support.

I’d hazard a guess that most autistic people have encountered bullies at some point in their lives?

Bullies are cowards. Bullies are not stupid enough to abuse people bigger or stronger than themselves. They dominate those who are different in order to boost their own self-esteem and there lies the problem: Bullies actually have low self-esteem.

While I am new to knowing I’m autistic – I have always been autistic and I’ve been feeling resentful towards the people who have let me down over my life. However, resentment will only harm me, not them. That said, I feel more in control of my life than I have ever been. This is why the mask is starting to fall because I no longer need to hide. For what’s left of my life, I will embrace being autistic because it’s who I am. Some people say their autism will never define them but I don’t feel that way. If I wasn’t autistic, I wouldn’t be me.

Being autistic explains everything. Every moment of my life. People think I struggle because I’m autistic, but that’s not true. I struggle with an overwhelming (and confusing) world and I struggle with people.

People are a major problem.

I’ve floundered about from one self-help book to another trying to ‘find’ myself and only when I had my third child did I finally get my answer because he was diagnosed autistic. I have so much to thank him for because without him I would still be struggling with my identity. I’m not sorry that I’ve passed my autistic genes onto him because he’s the happiest little boy I know. He does NOT suffer. He’s NOT a burden. He requires NO CURE. However, I’m am sorry that the world still has a long way to go when it comes to understanding him.

Not so long ago, the school asked him to name things he liked about himself and do you know what my beautiful autistic son said?

“I LIKE BEING ME.”

Will I ever be able to say that about myself?

Lets just say that I’m working on it. Yesterday, I left off the eye-liner AND eye-shadow and I went out into the world. Maybe to most women, that isn’t a big deal, but to me it’s HUMONGOUS because it means that the mask is slowly coming off.

I’m also growing my hair-dye out. This is a challenging process as I need things to be visually ‘right’ and the mad badger look isn’t exactly flattering. However, I choose to think of it as a transformation from my old (and confused self) to who I am now and with each inch of silver hair, I can see the real me emerging. Like a butterfly, no?

Sounds wanky, but it stops me from reaching for the box of hair dye that’s in the cupboard..

For most of my life, I have been a pretender – always trying to be someone else because I thought that I wasn’t good enough.

I AM good enough.

I always have been.

Wanting to be someone else is a waste of who you are ~ Kurt Cobain

Image Via Pixabay

 

 

 

 

 

 

 

 

 

 

 

Autism: Confessions of a Skin-Picker

 

What’s Stimming?

Stimming is self-stimulatory behaviour. It is repetition of movement, sound or movement with objects.

It’s done for relief and pleasure.

Simplified: Stimming calms or stimulates.

Everybody stims, however, NTs have more socially acceptable stims and are more able to control them.

With an autistic person – stims are necessary to their mental health well being.

We stim to release tension or to stimulate ourselves.

Some people stimulate themselves to feel pain for pleasure, like my friend who liked to pull her leg hairs out one by one using tweezers.

*eyes are watering*

I didn’t know I was autistic until five years ago – so I’ve had forty plus years of generally hiding/suppressing behaviour that I now understand to be stimming..

It started with spinning where, as a small child, I would spin myself around until the butterflies danced in my stomach.  Then came infants school where there were boxes upon boxes of colourful (and tactile) objects that I liked to stroke or manipulate in my hand. Doing this soothed my anxious mind – albeit temporarily. I wasn’t interested in constructing things like the other children. Sod THAT for a game of conkers! I just wanted to sit in a corner and stroke stuff!

Speaking of conkers…

I like to touch them. (NOT a euphemism)

Then came the glue..

You’re probably reading this and thinking, ‘Glue? Oh my God, she’s a glue sniffer!’

Rest assured. I wasn’t (and have never been) a glue sniffer.

I may, however, have had a brief dalliance with Tippex in my high school days..

One of my all time loves is art and that love started in school. However, art was sensory for me. Visually? Great. Smells? Not so great.

I loved the smell of paint. Still do, but not when it’s combined with the aroma of curdled milk, cabbage and dried vomit as was the case in school. That said, I loved to create pieces of art so I forced myself myself to tolerate everything else..

The other sensory issue was that I almost pathologically HATED getting stuff on my fingers..

My mother told me that I was using a knife and fork a lot younger than my brothers were. She presumed it’s because boys are generally slower than girls? I think it’s probably because I disliked the feel of slimy food on my fingers. *shudders* This also explains why I find making pastry so unpleasant, hence, I avoid it wherever possible.

Whoever invented ‘Jus Rol’ has my unwavering adulation.

So, glue..

The first time I used glue – the stickiness made me anxious but I had communication issues so I wasn’t able to ask if I could go and wash my hands. I was starting with palpitations when THIS happened:

The glue dried and I discovered that peeling it off my fingers was quite possibly the best thing to happen to me since Enid Blyton!

I could happily lose myself in a glue-peeling session which made my school day slightly more tolerable.

Note: FFS don’t try this using Super Glue!

Glue-picking was the precursor to my most used stim – skin picking.

Yeah, a lot of my stims are gross.

When I was 21 I got chicken pox. Initially, this was crap because I was pregnant at the time. I was the size of Brazil with spots that itched like fuckery. I remember the one thing that people kept saying to me: ‘WHATEVER YOU DO, DON’T PICK THE SCABS!’

That’s like telling Mary Berry to stop baking and become a binman..

OF COURSE I PICKED THEM!!

I especially loved the scabs on my head because I would pull them ever-so-slowly through my hair which was, like, orgasmically pleasurable.

I’ve always picked my spots. And other people’s. Feeling that satisfying ‘pop’ as zit matter is released at high velocity? That’s right up there on the pleasure scale for me. Welcome to the pleasure dome mateys! I literally don’t understand how a person can have a big fat juicy zit and NOT want to pop it? Weirdos.

Downside is: I have scars.

LOTS of scars.

I also pick the skin off my lips. Sometimes with my fingers – sometimes with my teeth. NOT the best of stims if you like vinegar on your chips!

Zit slaying and lip picking are stims I try and save for ‘me time’ because even I know that it’s socially unacceptable to be pecking at yourself in public like a demented pigeon. Even so – sometimes I forget myself..

My bad, motherfunglers.

Rest assured that once I’ve acknowledged my skanky behaviour, I switch to a more socially acceptable stim – like fiddling with my cube/keys/phone/pebble/whatever.

Should I mention that I’m allergic to nickle so when I wear cheap earrings, my skin weeps, then crusts over? I guess you’ll know where I’m going with this so I’ll move on..

My, not gross stims, include rocking back and forth or side to side. I take more in when I’m rocking because I am less focused on my anxiety. It’s a gentle movement but if I’m having an anxiety crisis at home, it’s full on IN YOUR FACE back and forth rocking sometimes combined with manic pacing up and down.

Then there’s my fidget cube. I say mine. I may have nicked it from The Boy because his stim of choice is to chew his nails..

I also use a spinner which I like to spin near my cheek because I like how it feels on my face. No doubt, I’ll probably end up in A & E one day with a spinner-related facial injury..

NOTE: I’m trying very hard NOT to think of the scab..

Next, is my thumb ring.

Yep, I just lurve touching my ring.

Leaaaaaaave it.

I always wear one on my thumb which I manipulate with my index finger or my left index finger and thumb. It started off as me trying to give myself an edgy look? Then I realised that manipulating it calmed me down, so I’ve worn one for years. My current one is metallic rainbow colours so I get visual and tactile pleasure. Win and win!

I also LOVE soft materials. I wear soft leggings and stroke my legs, but not in a kinky way. I love blankets too – especially fleecy ones. They comfort me and keep my extremities semi-warm as I seem to be lacking blood flow in my hands and feet. Plus, under a blanket, you can hide from the world.

Also, people trying to sell you PVC windows. Or God.

Going back to pastry, I was once informed that cold hands make better pastry? So it’s a shame that I dislike the feel of it on my fingers or I could be the pastry queen of the North by now, no?

I get that I have some gross stims. I mean, picking my skin is pretty, er, what’s that word the young un’s use? Ah yes, ‘minging’ but it gets me through the day and through life. It’s not like I sit in Costa flicking my skin into people’s skinny lattes is it?

FYI, I am picking my lips right now as I’m editing this post for the 135th time.

Finally, people may tell you that stimming is offensive or unacceptable. The problem is with them, not you. Stimming has a purpose. It is part of the armory that we need to exist in this world. For this reason (and many others) it is perfectly acceptable to tell them politely, but with conviction, to eff off.

Me? I stim to calm myself and because it feels good.